Paul K. Longmore Institute on Disability at SFSU

Part think-tank, part cultural center, the Paul K. Longmore Institute on Disability introduces new ideas about disability and disabled people.

[longmoreinstituteondisability]

The Qdoba story is simple: A woman with a disability went to eat at Qdoba. A former employee of the restaurant assisted her in eating her lunch. A bystander videotaped it as it happened and sent the video to a media outlet. People watched the video, cooed over how heroic that employee was to help a woman who is disabled, and began sharing the video all over the place. Let’s unpack this, because even my deep appreciation of human decency does not outweigh the problems with this video and how the responses to it have unfolded. First, why did the man who filmed the video think it was okay to do so? Did he go up to the woman and ask, “Hey, is it okay if I record you while you go about your daily life and eat a meal?” Would he have considered it appropriate to take a video of a non-disabled stranger eating? Probably not. Voyeurism aside, I’m deeply uncomfortable with how the media is handling the video, and with how people are responding. In addition to the fact that someone assisting someone else with eating should not have been deemed newsworthy to begin with, the woman is barely even acknowledged as a person. She is nameless, an object. Specifically, she is deemed an object of helplessness. But the woman is NOT helpless. She specifically requested assistance with eating, as is noted in the news clip. She advocated for what she needed. The employee’s assistance was simply a kind acknowledgement of her request. However, I’ve read some of the comments on the video posted on various websites and many of them miss the point, making my stomach turn. The comments regarding the man are all to the effect of “bless his heart,” “what a hero,” “such a saint.” And then there are the comments about the disabled woman, which essentially proclaim how sad and terrible her life must be if she cannot raise a bite of Mexican food to her mouth.

Why the Public Has Turned the Random Act of Kindness at Qdoba Unkind

[longmoreinstituteondisability]

The sign language bill before the committee comes almost 20 years after New Jersey’s decision to list ASL as one of the languages covered by the state’s Common Curriculum Content Standards. By one count in 2010, about 20 districts at the time taught ASL in their schools. But there have been questions as to whether it qualified to fulfill the state’s requirement that every high school graduate take at least a year of a language other than English or demonstrate proficiency in a language other than English. The bill would not require schools to offer ASL classes, only to count them toward credits if they are provided. The Assembly committee yesterday unanimously backed the bill with no discussion, after the Senate in February passed the measure 36-0. It moves next to a full Assembly vote, where passage looks likely. “This is one of those bills where I say, ‘You mean we don’t do that already?’ ” said Assemblyman Patrick Diegnan Jr. (D-Middlesex), the committee’s chairman. “To me this is common sense.”

Let American Sign Language Count For Graduation Requirements, Bill Proposes

[divergentfem]

Disability Representation in Film, Part Two: Cure Narratives

It is telling that TV Tropes has a page for the cure of disability as a trope. Disability is marketed as the great pity narrative, the great cure narrative, what more do you want than to cure disability because look at these people with their poor disabled lives? But acceptance would probably go farther than any pity narrative.

Alyssa Hillary wrote a great piece for Disability in Kid Lit (not film, I know) but a great piece nonetheless on “Who Gets to Stay Autistic?” and here I pose the question of who gets to stay disabled? I mean, they probably only get to stay disabled if they serve the purpose of the bitter neighbor making the other character look good, exemplified as a plot device in my previous piece on this.

The answer is typically that disabled characters typically don’t stay disabled on the screen in sensational Hollywood films or just popular films in general; ascribing to the medical model of cure, or as this Disability Studies Quarterly article puts it, “ Consistent with the medical model of disability, the hope for a cure, or a miraculous event where the individual overcomes their disability, is an underlying current throughout these films.” It is one of the tropes listed on TV Tropes, that the character overcomes their disability “heroically.”

Or, it is cured medically: disability is seen as a radical other that requires medical intervention; in an article discussing psychiatric disability in film, it is noted that “disability is often the featured representative trope within the borders between excluded other and successful medical intervention. In this sense, disability itself is a highly disruptive discursive element.” The goal of medical intervention after all is to cure, and many films featuring psychiatric disabilities take place in part in institutions, the goal of which is to cure patients of afflictions. The story becomes tragic and the character must fight through a great many obstacles to achieve this cure.

TV tropes notes the existence of more aspects of disability cure. They’re faking the disability! It was healed through divine interference! A popular quote has been going around Tumblr that I can’t quite locate that states that a lot more people are trying to be pretend to be non-disabled than faking being disabled. Still, that trope has had a bitter history and an even more bitter impact on disabled people, especially those trying to seek SSI benefits, for instance.

And when I say acceptance would go farther than any pity-cure narrative, what I’m saying is: it would put funds into the now, helping us live now as independently as possible, to help us live with dignity instead of the objects on the street, or the people on the bus complaining because people needed to use a wheelchair ramp to get on, or staring at an autistic person stimming or shutting down or melting down in public.

[andthenweloved]

We have begun to ensure a future for ourselves, and a future for the millions of young people with disabilities, who I think will find a new world as they begin to grow up. Who may not have to suffer the kinds of discrimination that we have suffered in our own lives. But that if they do suffer it, they’ll be strong and they’ll fight back. And that’s the greatest example, that we, who are considered the weakest, the most helpless people in our society, are the strongest, and will not tolerate segregation, will not tolerate a society which sees us as less than whole people. But that we will together, with our friends, will reshape the image that this society has of us. We are no longer asking for charity. We are demanding our rights.

Ed Roberts, April 30, 1977 (via moriartysdance)

[awn-network]

Lost Woman's Battle Cry: Dyscalculia and My War With Math - Home

by Aries Hines For eleven thousand, three hundred and seventy eight days of my black, queer, fierce femme life, I’ve battled with how easy it was for me to get lost. While in school, math treated me worse than my… Continue Reading →

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A primary aim of our work is that it is not only accessible but also a shared experience for D/deaf, hard of hearing and hearing audiences. To do this we must always question what each audience member is able to receive from the performance, so our general rule is: whatever is seen is heard and whatever is heard is seen. A typical rehearsal will consist of me harassing the video designer with notes such as: 'I can hear action, but I can’t see it … I need to see it.' This can be tiny, but if the hearing audience knows something that the D/deaf audience doesn’t, we need to find a way to change it. I can also be found having chats with the performers, saying things like: 'If this character is using BSL, do we need a voiceover or projected text for the non-BSL users?' The most important thing when it comes to both these points is that we need to solve it in the most appropriate way in relation to the world of the play and the story that we’re telling. We experiment with different technologies to make sound visual: sometimes we use beautiful subtitles; other times we write on paper. There are also times we don’t use language at all as the meaning is clear through the intention and performance. We give our audiences the credit they deserve. We want them to take from the piece what they want – maybe it makes them think, maybe they can relate and maybe they laugh along the way too.

Jennifer K Bates, director and co-founder of the Deaf and Hearing Ensemble, Staging theatre for deaf and hearing audiences

[divergentfem]

Disabled OC Grad Silently Protests on Graduation Stage After Not Granted Exit Ramp

For any student, graduation marks a joyous time of achievement.

[mirverse]

this short guide brought to you by an actual disabled person.

[mirverse]

1. DO YOUR RESEARCH

This one should be obvious, right? Don’t write without researching what you are writing about. Disability is a complicated and complex issue and you shouldn’t operate on assumptions. 

But here’s the thing: reading Wikipedia doesn’t count as research. Go beyond that. 

2. DO NOT DEPEND ON MEDICAL JOURNALS AND SYMPTOM LISTS

While it’s a good idea to consult medical literature, remember that - especially when it comes to invisible disabilities and neurodivergence - doctors can only tell you what the disease looks like, not what it feels like. While you should most certainly know how the disability in question presents, you should not rely on the word of medical practitioners alone. 

3. LISTEN TO ACTUAL DISABLED PEOPLE

To write authentically, with an understanding of what you’re writing, you will need to talk to and listen to disabled people. You will not be able to gain an understanding of what it feels like to be disabled, to have a particular condition, without talking to people who have it. Do not ignore this step or you risk writing a shallow (and often inaccurate) stereotype.

Of course, when approaching someone for information, remember to be respectful and not voyeuristic. Be prepared to be told to get lost - not everyone likes to be a source of information for the abled. 

4. DO NOT WRITE STEREOTYPES

There are many condition-specific stereotypes and I can’t really cover them all in a short guide. However, there are two broad stereotypes that are applied to the vast majority of disabled people and you should work to avoid both:

The Saintly Inspiration

Do not write disabled people who suffer without a single complaint, who Strive Hard to Overcome their Limitations and Succeed. Disabled people do not exist to inspire you. Disabled people do not “fail” if they do not reach abled standards of “success”. 

Certainly, there are struggles when one is disabled. Do not frame them as overcoming the disability: often, the real obstacle is not the disability but the lack of accommodation, understanding and support. 

The Bitter Cripple[1]

Do not write disabled people who are portrayed as unrelentingly negative, bitter and cynical and are cast in a bad light because of this. Disability is tough and some develop coping methods that may seem harsh to abled people, but it is what must be done to survive. 

5. DO NOT EMPLOY MIRACULOUS CURES

Disability shapes and moulds a person in many ways. Miraculous cures erase a part of a disabled character for a cheap happy end. It is an insulting and belittling tactic that tells disabled readers that they, too, need to be fixed, instead of being accepted and supported as they are. 

[1] If you’re not physically disabled, you shouldn’t use “cripple”. Characters may self-describe as such, depending on their attitude to their disability, but outside of fiction, the able-bodied should not use this term. 

[andreashettle]

6. Use disabilityinkidlit and its Wordpress counterpart, http://disabilityinkidlit.wordpress.com as resources. These sister blogs (particularly the reviews at at the Wordpress version) are a way to learn more detail about the kind of tropes and stereotypes that often annoy many disabled readers the most.

7. Consider joining the Disabookability Facebook group.  It’s not all people with disabilities, and it’s not all people who necessarily share the same disabilities as the characters they are reading. But following along with this ongoing conversation about disability in books, film, TV, plays, etc. could give you more of an idea the kinds of things readers are hoping for when they read a book featuring a disabled character.

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8. If you have access, check out the work in disability studies on representation

For example, Martin F. Norden’s The Cinema of Isolation: A History of Physical Disability in the Movies breaks down the ways that physically disabled people have been represented in Western movies. Norden identifies a dozen or so major stereotypes that appear across time, including the villainous Obsessive Avenger and the saintly Sweet Innocent.

9. Pay attention to how disability interacts with other identities (gender, race, sexuality, etc.)

The way someone experiences their disability depends on the other identities they hold. For example, a white, working class trans men in Appalachia who has asthma will experience his disability differently than a black, middle class cis woman in New York who also has asthma. So, it’s important to listen to disabled people across a wide spectrum of identities.

[shego1142]

Hey, are there any good books where the main character is Autistic? I’d love to know!

[rosslynpaladin]

The Lone Ranger and Tonto Fistfight in Heaven, by Sherman Alexie, is about several Native American people but includes a young man named Thomas. Thomas isn’t there for anyone to feel sorry for, he’s not magically cured by love during any of the stories, he just is the way he is.

It’s never stated outright that he’s supposed to be autistic but I feel it’s pretty clear.

[disabilityinkidlit]

“Depression Has No Straight Lines, Only Lies” by Kelly Jensen at Disability in Kidlit:

As a teenager, through college, through my 20s, my depression wasn’t “bad enough” in my head. It wasn’t real. It felt like an excuse for my behaviors, rather than the reason I needed to engage in those coping behaviors.

The reasons I thought that and denied myself the chance to heal were twofold: 1. depression feeds you some pretty heavy lies, and 2. despite knowing, writing about, and reading about women who struggle with depression like I did, who never ideated on suicide or engaged in self-harm, I never saw it represented in pop culture so I didn’t believe it was a thing that existed outside of case studies.

In other words, having never seen myself in the world around me, especially in the media I consumed and engaged with, my depression told me that my illness wasn’t reality.

[read the full article]

[andthenweloved]

In Britain in the 1970s, disabled people began to criticize the link between physical difference and social death, began to draw a distinction between impairment – which has to do with the ways we differ from one another – and disability – which has to do with the way impaired people are treated in a society that does not plan for impaired people. Disability, on this understanding, is not in-ability but dis-enablement, and nondisabled people are not, in comparison to us, innately able. They are, rather, enabled by a society set up to accommodate their needs and not ours. Disability is injustice, not tragedy; unequal treatment, not inherent inequality.

Critic of the Dawn (via moriartysdance)

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Inspired by Sins Invalid’s artistic, educational, and movement-building work and looking for more ways to get involved? A Summer Internship could be the perfect way to deepen your understanding of disability justice and practices of collective access, to build community with amazing people, and to support Sins Invalid’s work towards a world in which every bodymind is recognized and celebrated as valuable and beautiful! Queer, trans, and gender non-conforming people of color with disabilities strongly encouraged to apply!

Sins Invalid, a Bay Area performance group, is requesting internship applications to be sent in by May 30th.

[andthenweloved]

And, because disability is so identified with dependence, let me talk for a moment about that. I am a dependent person. I eat food whose final preparation I handle myself, but which has come to me across roads laid and maintained by other people from stores staffed by other people – and even those people didn’t grow or raise or harvest or slaughter any of it. I wear clothes made by other people from cloth woven by still others. I am human: I depend on others. And this is called independence. I am a dependent person. I need human contact, most of which I receive through an Internet built and maintained by many other people. I do not know my neighbors, but even face-to-face interaction requires someone’s cooperation. I have learned from my time in isolation rooms that I can handle a while without human interaction, but that eventually it will become unbearable. I am human: I depend on others. And this is called independence. I am a dependent person. The words I work with were taught to me by people who wrote and read them before I traced my first A. The language I work in is a living entity, shaped and grown over centuries by billions upon billions of speakers. The ideas I work on are part of a tradition nurtured by many thinkers. I am human: I depend on others. And this is called independence. I am a dependent person. I do not – have learned that I cannot safely – live alone. I require the patterns of life to be modeled for me over and over again. I struggle to get, and to keep, jobs in workplaces designed for “plug-and-play” workers. I learn some things quickly and easily; I need to be explicitly taught many things that seem obvious to others. I am human: I depend on others. And this is called dependence. Independent can mean self-governing. It can also mean self-reliant. It can deny others’ influence on our decisions or others’ support in carrying those decisions out. Dependent can mean controlled by others. It can also mean requiring the support of others. None of us, of course, is independent in either sense. We grow up in social contexts, supported and denied, enabled and disabled by those around us. But some rely on supports which are so common as to go unnoticed, while others use support that is atypical and therefore apparent. Some supports are provided by the community as a whole and go unnoticed, while others are borne – or not – by a small number of people whose lives are profoundly affected. So I know the ways in which I am dependent not by looking at how I depend on others, but by watching other people. I look to nondisabled people to tell me which kinds of dependence are recognized, which are devalued. I know the shame that comes with asking for “inappropriate” help. Within the disability community, too, there are fault lines around which kinds of dependence we recognize, which kinds we devalue.

Critic of the Dawn (via moriartysdance)

[beata-caroline-deactivated20190]

Early on in her social media journey, Deborah mostly used Twitter. It was through people she met there that she learned about Ehlers-Danlos syndrome. She talked with her doctor, who did her own research and sent Haber to a specialist, who diagnosed the rare congenital disease. Deborah’s online activity, then, led directly to the diagnosis, which led to “far better care.” Clearly, Deborah’s not alone: she’s part of a large and growing group of people with chronic illness in the U.S. who are using the Internet and other online technology to take charge of and improve their own health. This goes far beyond Googling your child’s weird rash: these millions of “empowered patients” are joining social-media communities, consulting online health databases, learning and sharing knowledge about drug side effects, crowdsourcing research studies, electronically monitoring their health and becoming health care activists who share what they’ve learned with their doctors. Online patients with chronic illness use social media to improve both mental and physical health and to better connect with an understanding community, says Jennifer Covich Bordenick, chief executive officer of eHealth Initiative, which published a study earlier this year on patients’ social media patterns. “It’s really incredible, if you look at what social media is allowing patients…to do right now,” she says. “It’s providing tremendous access to support, information, and it’s connecting people in a way that they haven’t been able to do before. … People with chronic illness are more motivated. … There’s an urgency there.”

Midnight Friends: How Wired Patients Are Transforming Chronic Illness (via beatacaroline)

[divergentfem]

Op-Ed: Economic Barriers in Disability Studies

By Corbett Joan OToole Conference registration: $230 Hotel room (3 nights at $159 * 17% for tax and lodging fees): $558 Airfare (roundtrip): $325 Transportation from airport to hotel (round trip): $54 Food (hotel restaurant per day * 3 days minus conference meals): $90 Required costs for this conference: $ 1,257 These are conservative numbers, particularly the food costs. But often that is the only place where I can cut costs. So when I attend a conference, I eat as little as possible outside of meals covered by registration, and I bring food containers from home to save part of each meal to eat later. On the first day I find a local store and purchase drinks and nonperishable food to stretch my money. Hotels are rarely near grocery stores so I am usually paying for overpriced, highly processed foods. I do this not because I want to. I do this because I am poor. I am a Disability Studies scholar. And like many other disabled scholars, I am poor. I receive [...]

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TECHNOLOGIST Are researchers working on prosthetics sometimes disconnected from reality? GREGOR WOLBRING Students engaged in the development of prosthetics have to learn how to think in societal terms and develop a broader perspective. Our education system provides them with a fascination for clever solutions to technological challenges but not with tools aiming at understanding the consequences, such as whether their product might increase or decrease social justice.

Augmented humans? Not so fast!

[longmoreinstituteondisability]

As the years rolled by and I grew to become an adult, I soon realized that the 'cure' my family was promised was a well-positioned fantasy, and that the true 'disease' that I 'suffered' from had nothing to do with Spinal Muscular Atrophy, but rather a general dismissal of disability by the greater society that I lived in; a society that never really found out what happened to Jerry’s kids after they grew up and didn’t care. So what happened to 'Jerry’s Kids?' Where did we go after attending MDA summer camp? What happened after Jerry Lewis sang, 'You’ll never walk alone' at the conclusion of the telethon? Did we suffer and die? Or did we flourish and shine? Well, I suppose it depends. A lot of it came down to our access to great medical care and technology, our support system, our education, our financial stability. Yes, some of us suffered and died. And yes, some of us flourish and shine. But very little of it had to do with the dollars that were dropped into a fireman’s boot or the shamrocks that were purchased. In fact, for me at least, I figured out as a teenager that MDA was more about idealism and childhood than the reality of living day to day with a disability as an adult.

From Poster Child to President